To the Family Members Who Exclude a Loved One With Autism

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Once upon a time there was a child with autism. He wasn’t “easy.” He didn’t talk like the other children in the family. He didn’t play the same games. He wasn’t interested in going to the same places — hot festivals, toy stores or noisy restaurants.

His family loved him, but he often wasn’t included. He wasn’t invited for sleepovers. He didn’t get the same special outings as his siblings or cousins. Initially, he didn’t notice. But as he grew older, he did. When they came by to pick up his siblings, he wanted to go too. When everyone left without him, he stood at the window and watched them drive away. But his family believed his parents understood – that he was too much to handle.

But he wasn’t. He was a joy. The outings he enjoyed were simple — rides in the car, trips to the grocery store, splashing in the pool, playing in the mud, swinging in the park. But, for whatever reason, he was never invited to do any of those things – the things he could do and enjoy — and kept being passed over for the children in the family who, presumably, were more fun to spend time with.

He continued to learn, develop and grow. Eventually, he knew. He knew he was different. But what he didn’t know was what the family assumed he would — that he was loved equally. That’s because love isn’t what’s declared. Love is what’s done. It’s easily identified in any language – or lack thereof. And when dispensed unequally – and obviously — it denies both the receiver and the giver.

He knows. You know. And there’s still time to do it differently.

This post originally appeared on Flappiness Is…

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I Have Autism. Here Are the 5 Things I Want Parents to Know.

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I was diagnosed with autism when I was 4. I found the word a terrifying place. In some ways, it’s still a frightening place for me. But I have reached a point where I am a professional public speaker on autism.

Parents often ask me to give them advice for their children who are on the autism spectrum. There are many things parents don’t understand about their children with autism. Here are things I wish parents of children with autism would understand.

1. Autism doesn’t mean their child is lost.

This would probably apply more to parents who have younger children with severe classical autism. I’ve heard some parents say they feel like autism has taken away their child’s mind and soul and left their body behind. I’d like to help all the parents understand that their child’s mind is still in there.

When I was about 4, I mainly spoke in my own language, but I had a level of understanding to a degree. I found the world to be a terrifying place with heightened senses and frightening people. I go into more details about this in my book about my life, “Thinking Club: A Filmstrip of My Life as a Person With Autism.”

2. Don’t assume because a child can’t talk, he or she also can’t think.

This is closely related to my previous point. Some children with autism can’t talk, and there are some who will never learn to talk. However, just because they can’t talk doesn’t mean they have nothing to say. It’s important to find any way you can to communicate with them whether it’s using sign language or getting them to type out their feelings. There are also non-verbal people with autism who show extreme intelligence when they type out their words onto a keyboard.

3. You can’t predict the future.

When some parents find out their child has autism, they feel like all their hopes and dreams are shattered. They say things like, “He’ll never be independent,” “He’ll never go to college,” “He’ll never get a job” and “He’ll never get married.” They say their child is never going to have a future.

I’d like to say to parents of young children with autism that the future isn’t set in stone. If you fight for your child and give them the right support they need, you may be surprised at what they can achieve in life.

At 21, I still haven’t achieved all of my ambitions in life yet, and I still need a lot of support. But I have achieved more than I thought I would. I now have a job in public speaking to raise awareness of autism spectrum conditions. I have a lot of support from my family, but my parents never thought I’d be able to do all the things that I’m doing now when I was a 4-year-old. I just want to tell parents not to give up hope on their children’s future.

4. People with autism shouldn’t always be held back.

This doesn’t just apply to people with autism, but to people with special needs in general. I’ve known parents of children on the spectrum who do everything for them and don’t teach them to do things for themselves. They may not teach them the skills they need to succeed in life. I’ve seen teenagers or adults with autism who don’t dress themselves but clearly could if they were taught to.

Now don’t get me wrong: There are people who are profoundly autistic who may also have a profound intellectual disability, which will require them to have 24-hour care for the rest of their lives. It may be hard for people at this level to learn basic skills, but I think any child with autism should be taught the most they can be taught no matter what level they’re at.

I don’t think learning should end there, either. I think people with autism should be taught skills that will help them cope in the real world. I’m still learning to cope in the real world. I’ve been learning to get public transport by myself to places I’m familiar with. I believe that with the right level of support, the majority of people with autism can lead successful lives.

5. People with autism don’t reach a set age and stop making progress.

A lot of people think that those with autism will have reached their potential by the time they’re 16 or so. This is incorrect. Many people with autism continue to make progress way into adulthood. People on the spectrum could even get to 30 and continue making progress. Many people with autism keep on learning throughout all their lives. This is an important message for parents who feel it’s too late to help their children.

Alex Lowery

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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I Can’t Predict the Future for My Son With Autism. But I Can Do This.

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When I published a piece on the Autism Speaks website called “Love Letter to my Autistic Son for When I’m Gone,” it clearly resonated with many people. I read every single comment on the website and Facebook page, and responded to as many as I could. The comments were both lovely, and in some instances, heartbreaking.

Many recounted their fears of what their son’s or daughter’s life would be like when they were elderly and or when they had passed away. One comment I read in the myriad of places I posted the piece stuck out to me in particular the day the piece went “viral.” In it, the reader blessed me. Then, she intimated that perhaps my son’s fate would differ from what I imagined it would be, and that perhaps one day he would become more independent than I thought. In my mind this equated to, don’t give up. I let her words roll around in my brain for a while as I tried to construct a response. Eventually, I quit.

The truth is my son is almost 12 years old. H unnamed-37 e has two words he uses independently, namely “popcorn” and “mama,” and sometimes still uses means other than words to acquire those things. He still needs help with going to the bathroom and minimal assistance with dressing and grooming. He is one of the lights of my life, but he requires the same constant supervision he needed as an infant and toddler.

One day when his father and I are gone, unless he lives with his brother, he will potentially be in the care of people not yet born. He will likely never live independently.

And to me, accepting this does not mean giving up.

Eleven years ago when he was first diagnosed with autism, I completely wanted an independence for him. At the time I lived in a state that only offered eight hours of Early Intervention a month, rather than the 120 hours studies showed he needed if we were to ever be independent. For almost a year and a half we labored together, my small son and me, as I desperately attempted to elicit sounds from my 17-month-old, then 2-year-old, then child approaching 3. I still read those “What to Expect” books and religiously studied their milestones, often feeling despair at how much he’d fallen behind.

I don’t remember when I finally realized he likely won’t be one of those kids who no longer needs a diagnosis, or move to the milder end of the spectrum. It was more of a gentle dawning for me, a realization that marriage, college and independent living were likely not in the cards for my eldest boy. I grieved for those choices he might never have, but even then acknowledged these were life choices I had needed to be happy. My boy didn’t. This realization helped me shelve my grief and move on to accepting his probable life trajectory: school until he turns 21, hopefully some sort of meaningful employment and a life spent living with constant support.

And I realized that shedding these more “typical” dreams is not giving up. Instead, I’m being realistic about my son’s future and planning for it in the best way possible.

I understand what the woman in the comment probably meant. I don’t know exactly what the future holds for my child — none of us do. But the best gift I can give to him is valuing what he can do and putting the appropriate supports in place the best I can. I will always regret I won’t be here to see him draw his last breath. In my fantasy world I live to be 120, and Justin passes at 84. I hold his hand as he is ushered into the great unknown.

It’s good to have goals.

But as controlling as I am, I can’t make that happen. But what I can do is accept what lies before him and try to construct for him the best life possible. A life where he remains the joyful, ebullient soul that he is. A life where he is productive and safe. A life where he is loved the way he deserves.

A life that never means giving up.

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When My Son With Autism Reads What I’ve Written About Him

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The decision to put your life out there for public consumption is a trying one. The decision to open up your child with special needs to the public is especially complex. I constantly weigh the pros and cons. I constantly try to respect his privacy and rights as an individual.

He can’t yet, but I believe with all of my soul that he’ll read the things I write about him some day. I know he’ll have questions about my deepest thoughts and emotions. I want him to know the reasons behind some of these choices.

I never anticipated the positive effect my writing would have. I never anticipated the “me too” comments and how not-alone they would make me feel. When the “me too’s” started coming from the other side of the globe, it was overwhelming. When my blog started, it all about him. But I have found such support and love and “me too’s,” it has become my little piece of therapy. I honor and thank every single person who has chosen to click that “Like” button on my Facebook page. They each are another brick in my foundation. I mean that with all of my heart.

This is what I want my son to know:

You’ll read all of this some day, buddy, and learn about your dad. I hope it makes you laugh. I hope it makes you think. I hope a lot of it makes you proud.

You’ll probably have a lot of questions. The first may be why I chose to publicly share so much of our personal story. The answer is right here on my Facebook page. Do you see that number next to the word, “Likes?” Click on it.

These are the people who understand us. These are the people who accept us. These are the people who share our fears and struggles and victories. These people, spread across the planet, are our family. At some point over the last few years, your dad wrote something that made them smile, or cry, or laugh or think. They decided to join our little journey and watch us grow. They became very important to your dad. They gave him support or lifted his spirits when he was down. They made him feel like he wasn’t alone. They gave him the amazing gift of feeling like he helped them in some small way.

They sometimes thank us for sharing our lives. But — and this can be our little secret — they have given us so much more.

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A version of this post originally appeared on the Bacon and Juice Boxes Facebook page. 

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What I Remember When My Daughter With Autism Falls Asleep

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The first time my daughter ever talked to me, really talked to me, was from under the covers, in the midst of our bedtime ritual. Hairwashing and teethbrushing and pajamas and stories. Bantering and bargaining with her sister. She started to sing a Christmas song but the words were her own. She was using the holiday melody to help move the words, which so often get stuck inside the complicated gears of her mind, to tell me she loved me and wanted me to stay with her. And for the first time in four years, I felt noticed, needed.

Autism has many potential tells. Sensory sensitivities and rigid thought patterns. Self-stimulating behaviors, repetitiveness, social delays, gastrointestinal issues and sleep disorders. We see some of this and none of this in varying degrees, but thankfully, sleep is not a problem for our eldest daughter. She goes to bed relatively easily and would sleep until late morning every day if it weren’t for the clamor of siblings.

Thankfully because bedtime in our home is essentially a series of battles fought upstairs and down; we become negotiators, defenders of “8 p.m.,” explaining the meaning and importance of sleep to three small people who want nothing to do with it. It is like this for the better part of an hour. It is pure folly. But once everything that needs to be cleaned has been cleaned, once the last bottle has been served and the last story read, once everyone has found their usual place for the night to fall… a quiet settles over our home.

They often fall asleep in our bed. It has become the go-to reward: to sleep in our room. They follow the same routines, but then crawl up and into our bed, bury themselves in the layers of pillows, sheets and comforter. Cotton and down. Bliss.

They settle quickly this way. The happiness of this reward must be overwhelming, and they are a precious mess of dangling arms and legs in no time. It is the perfect ending to a typically long and wonderful day, filled with the big emotions that characterize motherhood’s highs and lows and in-betweens.

Hours later, wrapped loosely around us, we carry them to their room and plant them in the coolness of their unopened beds. Their breathing is heavy and reliable. The same. You couldn’t tell neurotypical from anything. Autism is nowhere to be found.

I take great comfort in this. Sleep is the great equalizer. On bad days, it is the reminder that we get to start over tomorrow, that change and adjustments are possible. When my daughter sleeps, her body is still and calm and full of peace and vibrant dreams. Nothing is being measured or recorded. No prompting for attention or eye contact. No three-part directions to follow. When she sleeps, I imagine her taking apart the confusing structure of her time in our world and piecing it all back together in a shape that makes more sense. She’s just like anyone else when she is sleeping, no tics or tells. No IEPs or 504s, no social goals or gaps to close.

And I am just her mother, without concern or special needs to attend to. I get to remember what it is just to love her, simply and beautifully. Just: love her. For who she is and for who I am. A mother, a daughter, a wife, a sister, a woman, a girl…

Just people, navigating a vast and often perplexing world, trying to pinpoint what is positive and meaningful, trying to keep these things whole as we acclimate to the waters of disability. Trying to construct something useful with the pieces that don’t quite fit. Taking comfort in the hours of rest that are promised when the sun goes down, our daily bread, our dependence on tomorrow and another chance to take a few steps forward.

Follow this journey on Betty Sweet Writes.

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The 3 Words I Wish I Said During My Son's Public Meltdown

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Weeks after my son’s epic meltdown in REI, I heard the words I should’ve said. I’ve been trying to use them more ever since.

When I look back on the meltdown — by far the worst, most public one he’s had — it seems like a movie.

He was about 10 and in a boot cast after badly spraining his ankle. We had to switch him to super-sturdy hiking boots so he could stop using the cast. We’d tried once before to buy them at REI, but something in the store set him off.

While many autistic people like my son experience sensory overloads in places like Target, my son is able to handle that store and even enjoy it, bright lights and all. But REI sets him off. I still don’t know why.

That day, with the help of his service dog, he’d made it through challenge of trying on boots and finding ones that fit. We’d navigated the gauntlet of busy shoppers, curious dog lovers and racks of stuff.

One thing stood between us and the freedom and fresh air outside: a long line.

He started getting agitated. I kept repeating, “PT Amy says we need to get these boots so we can take off your cast. Just a few more minutes.”

I honestly don’t know how long we were in line. It seemed like half an hour. Half a day, even. But my memory is skewed by the fervor of his meltdown.

Finally, he blew. Yelled. Kicked. Laid down on the floor. Threw his beads.

The way I remember it, the crowd in line collectively took 10 steps away from us and gasped. In my mind, there were about 50 people in line and hundreds of shoppers, who all froze at once on cue.

The guy in front of me with a complicated return kept staring at his phone, unwilling to give up his place in line.

I kept thinking, “Why don’t they help me? Can’t they see what’s happening? A boy in a cast. A service dog. It’s pretty obvious what’s happening here, people!” I felt so alone. And I felt we had to get those boots right then.

One mom did help. She retrieved the beads then went back to her kids. She gripped them tight, her expression clenched in fear and pity.

pair of shoes

Finally, they brought in another salesperson. We bought the (expletive deleted) boots. The meltdown was over.

A few weeks later, I described the incident and repeated my internal monologue to my therapist.

“You could have said, ‘I need help,’” she gently suggested.

Never has something so obvious but so elusive been revealed to me.

It honestly never occurred to me that I could ask for help for myself. I’d been so used to helping my son and being his advocate, his explainer and soother in chief, it just never occurred to me to say, “I need help.”

I learned a lot since that day, not the least of which is to respect my son’s sensory needs, to get help for myself because that means helping my son, and to stay out of REI.

My first inclination is still to soldier on my own, but I’ve learned to stop, breathe and ask for help.

Three simple words that can be so hard to say for those of us special needs parents caught in our own flight-or-fight moments.

Three simple words.

Sophy Chaffee and her son

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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